[tri-med] Re: feeding tube question from a former list member

----- Original Message ----- 
From: "Therese"
> EWE!!!  MOLD...???  I once saw the deflated balloon a bit dark, or
> greenish, but chalked it up to bile (??)  or  gastric juices...

It could well have been mould - I know the first time I saw it I really 
freaked. The doctor wasn't perturbed but I didn't like the thought of it 
sitting in his stomach......YUK. Bile is bright green, the mould was black.

> I've written about this before, but in brief, At the time we tried the
> button,

Yes I realised after I sent it that I thought I had asked before....... 
sorry! Old age is setting in........

>>It was one more thing  for me to rinse, and if out
> of the house for several hours, I needed to be sure it was rinsed and
> bacteria free throughout the day....

It doesn't sound silly at all. But a few tips.
The tubes last a lot longer than the button. So you build up a collection of 
tubes as you get a new set of tubes with each button.

I have all the tubes hanging on the inside of a cupboard door in the kitchen 
now that Alex doesn't need sterilised. (sterilised ones I kept in a sealed 
container tupperware in the fridge)
Actually those clippy things work well - I can't think of the name of them - 
but they are a round circle that you press and they open up?? Made by 3M 
anyway and come in a range of sizes. I have a row of them on the inside of 
the cupboard door and after I have washed them I hang them in there.

Because I have a collection I take more than one with me when I go out. It 
gets "rinsed" when I flush so I just unplug and tuck it into a clip lock bag 
to wash when I get home. If I need another I just use another clean one.

If you forget to wash it when you get home and you cant wash it clean when 
you do find it you have a couple of options - toss it, or, I have soaked it 
for a few hours in a bleach solution - doesn't hurt the tube, rinse 
thoroughly and its perfectly fine again. And tossing is fine - if you have 
an insurance company that will buy you more tubes separate to the buttons 
(and most do)

>I could just feed and "plug"
> so I wasn't having a feeding "production" in front of other
> people...with water and rinsing etc.

I know what you mean, but its not really a huge production. Whip out the 
tube with the syringe, attach tube to syringe, push a little milk through 
(if you have a problem with gas - after a while I didn't bother to prime it 
because the Foley's wasn't primed...) and then attach it to the button. I 
actually found that folk were less put off by that, than me just pulling up 
his shirt and unrolling the Foley's... Either that or I was too busy doing 
it to see their surprise :-))

>>She loves to grab
> the end and "knaw on it"
> I've used the "grabber" as a good chew toy, or other toys, but if she
> is in the mood, she grabs the "folley"

Oh Alex definitely teethed on his Foley's as well!!!

> I'll find the plug out and wonderful juices all over her or my carpet!
> (YUK!)

Oh how I remember those days!!!! Actually I was cleaning out Alex's supply 
cupboard and found probably a hundred "plugs" for the Foley's - does anyone 
need them??? these ones have the "flip top" so I used to tape the plug into 
the Foley's. I ended up with so many when I asked for a "few" spares (I 
definitely didn't ask for THAT many!!) because one broke and I had to use a 
golf tee to plug the Foley's :-))

>>she can "knaw on the folley"
> and if the plug come out she can get a drink!    It can be funny and
> gross at the same time! :)

Ohhhh the memories - I had actually forgotten that one :-))

>>I remember the button didn't seem to let the
> skin breath?  So there was a bit of redness and irritation.
> Maybe it was just our experience...

If you want more air entry the Bard is flusher and smaller than the 
Mic-Key - but then so is the newer one thats similar to the Mic-Key with its 
locking ability and balloon - I just can't think of the name - is it the 
Star Entry?? But lockability is really only an issue if they are majorly 
active during a feed or they are overnight feeds.

The wrong size button and/or granulation will give you irritation and 
redness. Make sure that they size it correctly. If its the wrong size and 
there is too much play it will cause granulation.

> I guess if we try it again she'll have to be re-measured...We go
> through so many folleys, I would wonder if the button would last
> longer, and how many to you keep on hand...??

I change Alex's Mic-Key when it breaks - we got 12 months or more out of 
this one. My girlfriend however changes her sons every 6 months or when it 
breaks. I normally just keep one spare on hand because it may need a 
different size when I go to change it. Before Thursday I had two - but 
having used one I will just keep the one spare. We are allowed three a year 
through the scheme that buys them for us.

> I like having a supply of the folley's...never want to the the ER room
> replacement thing again....

Amen to that one - so you will need to look at the Mic-Key or similar 
balloon design if you want to change it at home. You "could" change the Bard 
at home but I personally wouldn't - not after having seen it changed with 
Alex. I would be petrified that I would slip with the obturator and put it 
through his stomach!!!

> Not sure what you mean here?   Sometimes I may see "stuff" around her
> tube if I haven't given her a bath that day...  or maybe I over fed her
> and a bit of formula/juices worked their way up the tube???   But I
> just pick it off...

Oh you and Alex would make a good pair - he picks off the brown "gunk" too 
and it grosses me out :-)))

Granulation is red tissue, its red because it has loads of blood vessels in 
it. Knock it and it will bleed big time. The best description of it was by 
someone on the list - its like a turtle neck grows out of the stoma around 
the tube. Eventually, if you don't stop it from growing, it pulls away from 
the tube making the stoma bigger and it will allow food and gastric juices 
to come out from around the tube. Thats what causes the irritation.

Alex has this particular form of granulation but he also has granulation 
tissue grow inside the stoma (towards the stomach and around the stoma 
inside his stomach - like I said he has it bad) - thats a lot harder to 
control. The outside stuff you can put a mild cortisone cream on, tee trea 
or eucalyptus oil and it will shrink. I use tea tree oil in the bath (keeps 
the school nits away as well) and cortisone cream as needed for a few days.

The brown gunk is just food and "gunk" - pick it off if you like - I toss 
the master in the bath and tell him to make sure he washes properly!! As I 
said a typical teen..........

> Are you folks in chat??  Guess I should try and figure out how that
> works...
> I think I have a fire wall. or something...but will check it out...

I left because Alex was being a pain - but there were Jenn and Darcy still 
in there.

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: